i am struggling so hard these days, a ton of the stuff below is very difficult. and social security delays continue to screw me over big-time, so i'm selling off parts of my life history and my soul that i really would prefer not to (along with lots of things i can't or don't wear or use anymore).
i'm currently offering 25% off custom orders for clothes and costumes so check out the rest of the for sale tag http://alumiere.livejournal.com/tag/for%20sale
. i've already sold my motorcycle and gear, but there are lots of clothes, corsets, etc for sale. plus my hand forged one of a kind skull pommel katana. eating and staying warm are more important though.
from here on the intro post was originally made in 2010 or so, with occasional updates. feel free to dig into my past posts, ask questions, etc... interaction is good, as long as it's civil; if you're an asshat you will be banned
as to who i am/what i'm interested in:
* i'm an old school punk (for real - born in 1966), now a "dainty punk" living in LA
* i have a bachelors in film/video (after spending three+ years as a chem-e major and realizing i'm good at but don't want to do that stuff) and am all but thesis on a MFA in theatre design (i failed at department politics, and refused to keep paying the department to tell me i was too alternative/confrontational when that was the theatre i love)
* i like cooking, sharing food with friends, clubbing, reading (everything from tolkien to shakespeare, atwood to allende, artaud to gaiman, kiernan, ellis, jemisin, butler, buckell, morrison and
...), theatre, good films, fun movies. but my main passions now are creating stuff - usually custom clothing and costumes for me and others, and getting lost in the music and dancing. dance is the only place i sometimes feel free and centered so i fight for it with all i have
* i'm polyamorous, queer, i fail at fitting into traditional gender or sexual roles, and i sometimes write about that stuff, but it's always flagged for those of you who don't want to read it. as far as pronouns go, i prefer they/them but she/her is acceptable. *labels i claim include genderqueer, lgbtq, hard femme, freak, goth, rivethead, punk, activist, feminist, atheist, disabled
* i'm mixed-race, more feminine than masculine in appearance, pan/bisexual and very anti-racism, anti-patriarchy, anti-homophobic, anti-rape, pro equality and i write about that too
*there a cute, bitey, projectile shedding princess named pris who owns me. she keeps me warm and her purrs are called sleepyons because they often knock me out which is helpful on bad pain days
* i've had arthritis in my right hip since a fracture over 20 years ago, and chronic pain in my shoulders/upper back forever. i have been more recently diagnosed (between 2005 and 2007) with hashimoto's thyroid/auto-immune adrenal deficiency, chronic fatigue syndrome, fibromyalgia and related health fail. i'm still learning how to cope with these conditions as they get worse - although figuring out the right treatment for this many problems is hard
*i have what the neurologist calls transient global amnesia; no known cause for that other than that it started after an extremely bad reaction to lyrica in 2009. it really fucks me up - so when i forget who you are, it's not you; i couldn't pick out my family most of the time. and my love of reading is way hard to indulge now, my cheats for keeping shit straight require cheats, and i may ask you to fill in blanks in my memory if we hang out regularly
*i can't afford some of the suggested treatments and struggle to pay for the absolute must haves; i don't a job, and medi-cal (thanks aca) helps but not enough. i've been fighting to get social security since 2010; they keep dragging their feet on a decision on my appeal from december 2014 (the latest word after my january 2016 er visit is hopefully april or may 2016, but please send them a detailed update and that i "should" be qualified). donations are welcome if you want to help me get through life til then...
note: a donation of $25 or more will get you a custom phone sleeve, glasses sleeve or change purse made of flannel or velvet or jersey remnants (just send me measurements). this is my phone sleeve:
All public posts are open to sharing, quoting, and commenting under a creative commons non-commercial license. Just make sure you link back here.
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wasteland weekend in disjointed thoughts... first and most important: that was well worth my energy and pain, i had a fantastic time. thanks to everyone who made it possible, especially luke for getting me out there!
but i could have done some things better, starting with: don't turn down the wrong road (two run parallel at the first turn headed offsite, the further one has a washout). luke had early admission tuesday because he was doing opening security, so i had to leave site and spent about 3 hours stuck in the sand trap with several other cars before one of the many folks who stopped managed to pull me out... finally got back to california city & slept for about 4 hours in the ace parking lot til friends showed up unexpectedly and we picked up supplies before heading back onsite. having fresh melon to share was a hit! also, make sure your gauze hoody is accessible for the wait breaks on the way in.
load in was surprisingly easy thanks to luke having set up my tent tuesday night and i relaxed in the shade attaching lighting to my cane or with a good book until evening (theme for my weekend - bring books!).
wednesday evening/night i wandered through the theme camp area, caught up with a lot of friends, made out with a sweet pretty boi (pack toys & protection even if you are sure you won't want them) & spent a few hours dancing on a box at the pit. new rocks are fine in the desert, but their boxes are boardwalk style & stilettos get stuck - bring more chunky heels!
i slept for shit though - it's been long enough since i did any camping that i forgot how damp everything gets at night; took me two days to figure it out. plenty of blankets etc but i couldn't stay warm and my fibro was a massive pain. i need to pick up a propane tent heater for camping trips.
thursday i finally slept after the sun warmed things up - in my tent til it got too warm, then in a sling chair in the shade but not enough. after lunch i wandered around, spent some time with olya greg omar amanda & co, hit bartertown etc. caught sid at deathguild & talked for an hourish on their porch which was perfect. as i was leaving, one of the many art cars gave me a ride to camp - obvious freak in high heels ftw (another theme for the weekend - take the offered rides and pay attention when they drive by camp so you can see more but walk less!)
aj & poisal are here! make dinner to share (mac & cheese with refried beans and extra cheese is a good choice), get dressed & head out for more fun. #dgtd
opens tonight, be sure you make it at 10pm for marisa's aria!
attaching your drink & phone case to the d-rings your clothes doesn't work for you - your small backpack is much less annoying! masks with dresstape are great - no need for makeup except copious repeated moisturizer & lipgloss.
el hoop skirt is not as bright as your cane - be more cautious about staying on the main roads so you don't get caught on the shrubs and lose your phone trying to untangle yourself. also, add portable layers (net underskirt or leggings, sleeves etc) in your backpack & a handwash/lotion kit because purell is shredding your skin. dance a little, search for phone, call it a night early because you're pissed at yourself & want to be up to check security/try to retrace steps before it gets too hot.
friday - search for phone at sunrise since you're up, check security a few times, lots of phones but not yours. nap & read in shady chair, eat leftover mac & cheese for dinner. mini photoshoot in the scrub as the sun is heading down lifts mood so get dressed early & catch ride to masquerade before eight. gentleman who found your phone returns it as you leave #dgtd
opening to make another check at security - you are easy to spot at night even masked (win).
get enough charge on phone to check in that all is well (invest in battery/solar charger of your own), refill drink & take all the meds & pack backups - tonight you dance! watch omar & ? battle in thunderdome then spend hours on the box at the pit, occasionally yelling comments to white rabbit dancing above/behind you. reactions from the other dancers make you happy and you are seriously amused by the young couple who decides to turn a kiss into not quite sex leaning against the piling at your feet. point out the offering to rabbit & share a wtf but hey tribute moment. thank waffle profusely for allowing me to monopolize the box all night except for a few bathroom breaks. stumble back to camp (thank fuck for my cane), curl up in comfy chair and read for a while - all the endorphins in the world can no longer cover for the pain. crawl in bed for a while but pretty much fail to sleep until mid-morning when it warms up enough for knots to relax a bit because you cannot handle more meds. next year try to pace yourself better!!
saturday is all about good books & catnaps and people who drop into camp. i overdid it friday by a fucking mile and i'm nauseous as fuck from pain and all the meds last night. finally get some food down, get dressed & catch a ride again. meet up with aj & poisal in one of the theme camp bar areas & have a wonderful conversatiom with aj, see the end of boulet brothers & a fire show at mainstage. last opening at dgtd is as awesome as the first. a bit of wandering, friends playing pool, stop by to thank the pit staff & try briefly to dance but nope, nope, nope. back to camp by midnight-ish curl up with another book, manage some sleep.
pack up to head home sunday morning (remember work gloves!! & a towel for the carseat). looked up food options on the way out because i'm starving. thank fuck i can have protein style burgers & fries at in & out.
i needed to bring more smokes, pepsi, birch beer & amaretto (shared more than i planned but didn't quite run out) next year. mandarin orange cups & eggs would have been nice. otherwise i did well on food etc though. put a hard folding chair just outside tent door to remove shoes & drag in less sand/as support for climbing in & out. also put empty packing bin just inside door for laundry, maybe a rug too.
i had the soles on both my new rocks & my demonias peel apart from the combination of heat & sand... they're being fixed (new rocks with added stitching), but that was annoying and meant i was down to one pair of boots by friday night. so i will keep an eye open for new heels during the year, with sewn on soles.
takeaways - i missed pretty much anything that happened during the day to coping with broken. i'm fine with that, but hoping next time to have more people come see me (maybe a friday & saturday cocktail hour?). i should do better to pick up rides during the day because no vehicles are allowed at night. camp closer to the city next time? don't lose your phone! fix it so i can sleep at night & try to pace myself better. but fuck that was a good weekend and i will be back if i can swing it.
Since I wrote this up for a friend, I thought I'd post it here. This is not how a hair professional would recommend doing this, and may not work for everyone, but it worked for me. My hair was dark, almost black brown before this process and I'd get vibrant dark red, purple and/or blue when I was done. FYI, I almost always used Special Effects colors, which can be hard to find at times in stores, but stay better than Manic Panic or Raw for this method.
Wash with a clarifying shampoo, no conditioner, and blow dry (this will make your hair the most open to absorbing the color - like untreated dry canvas soaks up paint). The dye will stain your skin and nails - put cream on your face/neck/ears first, and wear gloves to apply. Then apply dye (I use special effects, but pravana is also good if you have a friend at a salon who can get it) and let it dry on your head - I'd wrap it in an old towel and sleep with it in, so 24+ hours. A hint - since this is non-permanent dye, the more thoroughly saturated your hair the better - for my hair it took about 2/3 of a bottle each time; and we'd brush it in, then go back over to make sure everything was soaked.
On darker hair, the darker colors work best - I tended to go devlish (red), deepest purple and/or electric blue. For variegated color do 2/3 to 1/3 and swirl - basically make the color in the bowl look like marble cake batter. But if you have blondish hair or highlights some of the less deep/saturated colors would be great too; just know that different colors fade at different rates, so 'your mileage may vary'.
Once it's dry if you use purple/blue, you'll look like an iridescent beetle is perched on your head - it's kinda beautiful - but regardless of the color it'll be really stiff and helmet like. Rinse thoroughly with the coolest water you can stand - I found a comb helps loosen it up/get it out once you've softened the dye. And it'll take a while to get the water clearish - I don't shoot for clear the first few times; as these are non-permanent dyes, they will bleed a bit. Do not shampoo for at least 24 hours, longer if you can, to give the dye as much time as possible to take.
A hint on rinsing - this dye can stain your skin - so I tend to get in a warm shower and thoroughly rinse my body first so it's less able to absorb it, then drop the temp to rinse out the dye, minimizing the rinse water/body contact. Afterwards, if you wash your body with warm soapy water and a scrubby/loofah most stains will come off quickly (but try to keep soap/scrub away from the freshly dyed areas), and commercial hair dye removal pads are the best for getting your hairline cleaned up without losing the color.
Shampoo as rarely as possible, with color safe shampoo - just rinse and/or "dry" shampoo in between washings. That usually helps the color stay vibrant up to 2 months. You can also add an in-line water filter to your shower head setup (like the Sprite filter we use) - it helps especially if your water is hard or chlorinated.
It also helps to mix some color into your conditioner to keep color vibrant. For "dry" shampoo look in the african american haircare section. Or use cornstarch mixed with crushed matching color chalk to lengthen time between washings but keep hair fresh and non-oily.
fucking fuck. flight or fight response triggered again. this needs to stop so...
i love my friends, but it is not ever okay to grab someone from behind if they don't know you are there. or to snatch them up for a hug or kiss them on the cheek or pet their bald head or... regardless of whether you've got permission to hug, kiss, pet, etc please stop this shit (unless you have specific permission to grab from behind while you're at X because they like the scare).
in recent weeks people have done a form of this to me when i was getting off the subway, on the street, at the club, and out for food. please, i beg, never ever blindside someone. i can guarantee you that several of the people you know have had trauma or training of some sort which means if you do that their brain might work like mine.
1) where am i and what's my escape route?
2) is there anyone here who can back me up?
3) do i need to fight? if so what's my best course of action?
4) who the fuck has me (size matters in self defense)?
5) oh, that's Z - stop. do not hit, kick or scream, you know them. (also, Z is fucking lucky i took the time for step 5 before i kicked them in the groin or elbowed their face hard enough to cause a nosebleed or...)
6) spend the next 30 minutes plus trying to come down from being triggered, probably need to go hide in a quiet corner to get myself under control
7) try to pretend i'm okay so that i can get back to whatever i was doing before my friend grabbed me
8) if i have time have a talk with them about why what they did isn't ok regardless of who they are or who they've grabbed
9) hope that my afternoon/plans/night/etc isn't totally ruined by the adrenaline rush, fear, anger, come down cycle (note - it often fucks my day up bad; i just walked home rather than going the rest of the way to the pharmacy to pick up my meds because i needed to retreat and regroup)
call their name, move so they can see you, at most tap their arm/shoulder gently to get their attention. or wait a minute and see if they turn around - they'll be much happier to see you without the flight or fight response. trust me, and thank you.
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eta (from failbook discussion) the thing is, i know it's not just happening to me; i've seen it happen to other women who freeze up and get silent. and some of the guys i know too - only they're uncomfortable saying anything, especially when it's an attractive female friend who's done it. so it's something everyone needs to be aware of - it's one thing to grab someone when you've already made sure you've made eye contact and that's normal for your interactions, and it's a whole other ballpark when they're unaware you're there. but i'm okay now - the rant actually helped, and i heated up pulled pork bbq for dinner while i calmed down. i'll get meds tomorrow instead.
posted this and it seems like a good way to spend a little time...
1. Do you like blue cheese?
yes. generally i go for soft milder blues when shopping just for myself. but cheese plates for sharing almost always have a few blues
2. Have you ever smoked?
yes. not til 20 something, i quit except for social smoking for 5 years, then went to grad school. stress = i eventually started smoking regulauly again. i've quit multiple times since moving to los angeles before realizing the clove cigarettes keep some of the nastiness of auto-immine disease and brain fail in check
3. Do you own a gun?
my ex-husband and i jointly owned several. he kept them all
4. What is your favorite flavor?
extra salty savory tastes, pretzels with hummus & cheese
5. Do you get nervous before doctor visits?
new doc yes, doc i know/trust not really
6. What do you think of hot dogs?
overall meh, bacon wrapped kosher dogs properly grilled are a rare treat
7. Favourite Christmas movie?
maybe animated grinch
8. What do you prefer to drink in the morning?
water, mexican coke, red chai with honey or orange peach mango juice
9. Do you do push-ups?
nope. even when i was climbing or teaching aerobics my body would not cooperate.
10. What is your favourite piece of jewelry?
all my daily sterling silver? my grandmother's vintage pink gold watch? the jade pendant christopher gave me with the request to never take it off (it's always against my skin although not necessarily around my neck)?
11. What is your favorite hobby?
12. Do you have A.D.D.?
not that i'm aware of
13. What is the one thing you hate about yourself?
transient global amnesia. before lyrica fail my tendency to accept blame & apologize for everything (i still do this i think, but i forget so much it's hard to be sure)
14. Middle name?
15. Name three thoughts right now?
my face hurts. my hands/arms are wrecked. this is fun, thank fuck for androids and voice to text.
16. Name 3 drinks you drink regularly.
amaretto di saronna, juice/lemonade, sodas with real sugar
17. Where's the question?
18. Current hate right now?
19. Favorite place to be?
the monte cristo with xian spinning
20. How do you ring in the New Year?
helping out at xian's nye ball
21. Where would you like to go?
now? a warm pool with a hot tub next to it.
22. Name three people who will complete this?
23. Do you own slippers?
ultra-suede & memory foam basic black 'mens' slippers
24. What colour shirt are you wearing?
silver & black dress, black gauze hooded coverup
25. Do you like sleeping on satin sheets?
no. no. no. 100% cotton, high thread, freshly washed.
26. Can you whistle?
27. Favourite colour?
jewel tones (green, blue, red), deep purple, black & white & silver & grey
28. Would you be a pirate?
29. What songs do you sing in the shower?
synthpop, occasional ebm, portishead
30. Favourite girls name?
31. Favourite boys name?
32. What is in your pocket right now?
burt's bees lip gloss (plum), meds, ginger mints, smokes/lighter, id/$, bus fare
33. Last person that made you laugh?
34. Best toy as a child?
35. Worst injury?
as a kid? cross eyed=surgery, broke front teeth off in telephone pole collision on bike, tore open head on side of pool after 1 1/2 flip in. as an adult, fractured hip socket, fibro
36. Where would you love to live?
i'm here already - los angeles is a wonderful fit
37. How many TVs do you have in your house?
zero unless you count computer/phone for streaming stuff
38. Who is your loudest friend?
clothes - bellz, voice - o or b or j
39. How many dogs do you have?
no dogs, 1 cat
40. Does someone trust you?
lots of people. i earn that though
41. What's your favorite movie?
impossible - i was a film major & i'm a cinema nerd. that i worked on, naked & afraid, aids project or the engine films maybe
42. What is your favourite sweet?
amaretto di saronna or really good peaches or nectarines
43. What is your favourite sports team?
us women's soccer?
44. What song do you want played at your funeral?
i plan to host my own wake before i die so i can dance at it. funeral - as long as it's not religious i don't care, maybe black celebration?
45. And since that was a morbid note to end on -- what is your favorite thing about *yourself*?
my anger - without it i'd curl up in a ball & stop. it's fuel and usually i can release it if the anger gets too much (hence fighting to keep dancing - my center). controlled rage is what makes me go
since today is fibro day, here's the latest on my ongoing lack of cope, how fibromyalgia has impacted me personally, and both the good and bad in my life in spite of this asshole of an illness.( long post is longCollapse )
please, please boost my fundraising - it would be awesome if it went viral. http://alumiere.livejournal.com/452956.html
anywhere - lj, fb, twitter, ig, wherever you think people might see it who are interested in sewing or swords or might have a few bucks to spare - 600 singles would make a huge difference. and if you've already spent money with me this year, i'm not asking for anything more - you've done your share.
custom clothing, kilts, costumes & cosplay - 25% off! (sale extended as i'm still struggling to catch up and have been turned down again for my much needed medication)http://alumiere.livejournal.com/452233.html
raid my closet part 3: dresses, skirts, pants, tops - lip service, tripp, made by me, etc http://alumiere.livejournal.com/451757.html
raid my closet part 2: corsets, bustiers and cinchers - brute force leather, house of worship, vollers, tripp nyc, & living dead soulshttp://alumiere.livejournal.com/451454.html
custom hand forged skull pommel katana from shark of shark's cove:http://alumiere.livejournal.com/451271.html
please share me?
or, i am not a fucking addict
earlier today, in response to an ongoing conversation about the new cdc guidelines on opiates (see here: https://storify.com/AnaMardoll/chronic-pain-disability-and-opioid-access
) i wrote this series of tweets:
dear obama administration/fda/cdc - your new rules on opiates hurt chronic pain patients to the point that many of us will die b/c of it.
it was already ridiculously hard to get the medication that keeps me from spending days on the bathroom floor puking b/c of pain
now, i'm out of [med x], can't get new doctors to fill them, can't afford out of pocket visit to old doctor to fill them, so...
i'm losing 2-3 days a week to pain and vomiting. also dropped too much weight since i can't hold down food. 5'7 and 91lbs
is not okay, even for super thin me. please consider the people who need opiates to live & change your rules before we start dying
and then i read http://theferrett.livejournal.com/2050453.html
which got a lot of things right, but also failed for me by calling a chronic pain patient who needed opiates an addict. this was my response:
"not bad overall. but... i don't think your uncle was an addict. if he needed the meds to function, if he wasn't getting high but getting relief then he's not an addict.
this may sound harsh, but are you an addict because you need your meds? what about the diabetic on insulin? so from my pov, calling tommy an addict is calling me and every other person with an incurable pain condition an addict. it is wrong, and part of why these bullshit guidelines are now in place - because we're seen as not fully human due to our conditions.
i wrote about how hard it is before these new guidelines earlier today here. https://storify.com/alumiere/the-policy-on-opiates-in-the-usa-is-hurting-people
people are going to be harmed and die because rather than prevention & treatment we prohibit and shame. and if something doesn't change for me soon, i'm likely to be among them. because without opiates i can't hold onto enough food and it's terrifying to watch your body waste away because the cdc thinks chronic pain patients don't deserve treatments that work."
p.s. if you're able to help/share i'd appreciate it; a fundraiser to help pay for my medication and get me through some tough times (i'm offering perks too) https://www.youcaring.com/alumiereandpris
making the twitter thread a single post here:
this piece gutted me. http://projects.sfchronicle.com/2016/living-with-aids/story
… talking with survivors of #aids early days in SF, and where they are now.
as someone who outlived her entire community in nyc due to luck of not getting hiv, i am thankful for my life as fubar as it is....
...& every day i struggle i remind myself that the best thing i can do in memory is fight, be angry. also to live, love, find a bit of joy.
i wish lyrica fail hadn't broken my memory; names, faces, loves, hopes & dreams of those i lost are gone forever. just traces & feelings now
but i'm still here, and i carry them in my heart even if i can't remember them properly anymore.